I have been diagnosed with Possible MS and am now going thru testing. I have the EXACT same problem as you! You need to see an Anal Rectal Specialist and have Anal Manometry testing done. If you live in a rural area you may have to travel to a city to get this testing done as machinery is very expensive and many Drs wont have it.
I have Neurogenic Colon = VERY SLUGGISH PERISTALSIS. I also have a constant spasm as contraction of the anal sphincter which means I cannot have a bowel movement without assistance because sphincter must relax for that to happen. I also have no rectal sensation so even if a bm is there, I cannot feel it. I have to take a handful of Bisacodyl & MOM X 3 just to have A bowel movement. I often get impacted and suffer from vomiting before BM and if bowels are full. I also am also VERY TOXIC and suffer increased bone/joint/muscle pain because of this. AND YES, I have also been told no alternative but colostomy. BUT WHY? IF WE HAVE BOWEL MOVEMENT PROBLEMS THRU ANUS WE WILL HAVE SAME PROBLEM WITH COLON WASTE COMING OUT OF ABDOMINAL WALL! THE PROBLEM IS NOT THAT WE DONT HAVE AN EXIT POINT, its that we cant get it out the exit point without pressure above waste to get it out like a full bowel or water pressure from colonic, enema, digital assistance, whatever we gotta do to get it out... There IS AN OPTION FOR SOME PEOPLE TO RETRAIN THE BOWEL THRU BIOFEEDBACK! That may be an option for you! Please investigate that via Manometry testing. I do not have that choice because I have no rectal sensation. You must be able to feel sensation for biofeedback to work.... PLEASE GET TESTED FOR MS BECAUSE THIS IS A COMMON CAUSE OF MS OR SPINAL COMPRESSION INJURY. I also have Neurogenic Bladder, bladder sphincter contraction and no bladder sensation until 800 mL thru Urodynamic testing. If you have problems urinating please request Urodynamic Testing. SO GLAD TO KNOW IM NOT THE ONLY ONE! PLEASE SHOW THESE FORUM POSTS TO YOUR DR! I WILL AS WELL... There arent many studies in this area, but one can definitely see commonality of many symptoms in these forums, and its a great place for Drs to educate themselves on the many symptoms they may not have heard of yet. Im an RN, and I plan to review these sites throughout my education for Nurse Practitioner. Thanks for posting! I encourage you to continue.
FYI - I HAVE A HIGH ACE BLOOD TEST.. DOES ANYONE OUT THERE ALSO HAVE HIGH ACE? I ENCOURAGE YOU TO ASK YOUR DR FOR THIS TEST. ACE INCREASES WHEN GRANULOMAS/SCARRING FORM.
FYI - I HAVE LUNG FIBROSIS/SCARRING... DOES ANYONE ELSE HAVE THIS WITH MS?? SO FAR BIOPSIES HAVE BEEN NEGATIVE FOR SARCOIDOSIS.